Information recall in genetic counselling: a pilot study of its assessment

One of the main aims of genetic counselling is to provide information to patients that they can understand and recall. Measuring information recall is problematic and most studies do not make the comparison between recalled information and the information that is given in consultations. The aim of this study was to determine the validity of using genetic counsellors' reports of information given in genetic consultations as the basis for a measure of patient recall. Counsellors in 35 routine genetic counselling consultations were asked to indicate important information given during consultations by highlighting items in their summary letters sent to patients. This was checked by a researcher against tape-recordings of the consultations. One month later, patients were telephoned by the researcher and asked to recall as much information as they could from the consultation and to rate its importance. Over 95% of the information that counsellors identified as important had been given during the consultation. Patients rated this information as important. Although there was an association between the overall number of items that counsellors and patients judged to be important, patients more frequently judged information about family implications to be important than did counsellors. On the other hand, counsellors more frequently judged information about test, diagnosis and prognosis to be important than did patients. These results suggest that counsellors' summary letters are a valid baseline against which to measure patient recall. This measure will not, however, capture all the information that patients consider important.